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Author Topic: seeing a neurologist and trying to get an ALS Test  (Read 1112 times)

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Offline madmexican808

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seeing a neurologist and trying to get an ALS Test
« on: May 30, 2014, 04:54:50 PM »
My mind has got the best of me. I freak out about my left shin muscle tightening due to an ankle injury and I noticed my right foot is slightly bigger and I am left side dominant. I decided to try to see a doctor and get an EMG test. Curse the fact I saw twitches on neck and that caused me to freak out since then.
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Offline Nk904

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #1 on: May 30, 2014, 06:35:45 PM »
I have twitches non stop 24/7 in my calves and usually other places pop up. Trust me, you have anxiety. Quit reading, man..
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Offline ShawnW

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #2 on: May 30, 2014, 08:20:57 PM »
If he is a smart neurologist he won't do an EMG unless there is weakness, true atrophy, and/or asymmetric reflexes.  Nothing you spoke about sounds even remotely like ***.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #3 on: May 30, 2014, 11:50:22 PM »
If he is a smart neurologist he won't do an EMG unless there is weakness, true atrophy, and/or asymmetric reflexes.  Nothing you spoke about sounds even remotely like ***.

if only I felt reassured the next day and so on and so forth and not just one day.
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #4 on: May 31, 2014, 12:46:02 AM »
Alright man, I know it's tremendously unlikely you get over this fear after visiting a neurologist; I did and it's done little to relieve my fear. I've scheduled another appointment soon for a second opinion.

7 months. 7 months according to top MND without weakness and a clean EMG and you're 'officially' cleared. I've read copiously on this disease and if all you are is twitching, you're 99.999% likely to be fine. Unfortunately, personally, my twitching has presented with a few other things that slightly works against my odds (not by much, I'm probably fine too).

It's going to be a long, long 7 months. But there's your definitive end. I am so sorry you're going through this man. A clean EMG will help to reduce your fears, but it will not end them. Me, I'm only a month and a half into this. If you do see a neurologist and you have no UMN symptoms/clean EMG/no weakness/no atrophy, I can tell you it's ridiculously, ridiculously unlikely. Ridiculously.
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #5 on: May 31, 2014, 03:29:24 AM »
Alright man, I know it's tremendously unlikely you get over this fear after visiting a neurologist; I did and it's done little to relieve my fear. I've scheduled another appointment soon for a second opinion.

7 months. 7 months according to top MND without weakness and a clean EMG and you're 'officially' cleared. I've read copiously on this disease and if all you are is twitching, you're 99.999% likely to be fine. Unfortunately, personally, my twitching has presented with a few other things that slightly works against my odds (not by much, I'm probably fine too).

It's going to be a long, long 7 months. But there's your definitive end. I am so sorry you're going through this man. A clean EMG will help to reduce your fears, but it will not end them. Me, I'm only a month and a half into this. If you do see a neurologist and you have no UMN symptoms/clean EMG/no weakness/no atrophy, I can tell you it's ridiculously, ridiculously unlikely. Ridiculously.

it takes that long?? holy crap...
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #6 on: May 31, 2014, 03:59:43 AM »
Not usually. I'm speaking in worst-case scenario. Since, as a hypochondriac, I'm positive is all you REALLY care about. Usually it doesn't even begin with twitching. Usually you have clinical weakness as a first symptom. Trust me, statistically, you're fine.  In fact the chance is so profoundly small, I can say with immense certainty you're fine, but this one's a difficult fear to shake.
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #7 on: May 31, 2014, 04:09:28 AM »
I'll add, all of the people who had twitching that later developed into ___ had UMN symptoms + EMG abnormalities (fibs, pos sharp) at presentation in limbs most affected. But your timeframe to be 100% sure, if that extra .00001% is necessary for you, as it is me, is 7 months. But seriously, if you have a clean clinical and no UMN symptoms, try letting this go. If your neurologist says you're okay do your absolute best to trust him.

ShawnW is a great guy to talk to about this. He can confirm everything I've just said. He's also way better reassurance than I am. After all, I'm still in the throes of this horror too.

More, don't self-test. Skip that. Don't. You'll stress your muscles/tendons/whatever and you'll cause yourself more grief stressing over sore muscles and painful joints. And don't set your jaw. Mine's painfully sore from anxious tension and you'll begin believing it's bulbar onset. It isn't bulbar onset. You hold tension in your jaw and anxiety will affect your speech if you begin thinking you have bulbar. Same is applicable to limbs. Try not to hold tension.

Just trying to anticipate 'symptoms' you'll later experience. Critically, rationally analyze what you're going through and if there's another, more likely, more logical explanation, it's that. It's always that.

Fourth edit, don't look for atrophy. Your body is asymmetric. You don't know what you're looking for. You would have clinical weakness and extreme deficit before atrophy. You will find pits, scars, holes, dents, everything. Unless you're REALLY weak in that limb, ignore it. I have a dent in my forearm. No idea what it is. I don't grow hair there either. Looks like a circulation issue or a scar. At first I freaked out and thought  I was dying. It wasn't atrophy. One side will be bigger than the other. Also not atrophy.

Fifth, if you don't take the advise of this board and go out and consult doctor Google, the dents in your tongue are tooth-marks. Everyone has them. If you go further and find out how to examine yourself, not everyone is very coordinated with their tongue. I can't move mine up and down very well or fast. Well, actually, I can now, after having practiced so much by self-testing. But a month ago I couldn't. Means nothing. Don't think about swallowing or you will develop problems swallowing. Don't focus on your saliva or you will develop excess. Don't focus on your breathing or you will hyperventilate. By the way, hyperventilating can cause twitching. Don't focus on twitching either. You will twitch more. Your body is a big-fat liar. Reject everything it tells you with regard to ___.
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #8 on: May 31, 2014, 05:00:29 AM »
And more. Do not go to the ___ forums, but because I know you will, don't listen to anyone there, except, I believe his name was Write. He's somewhat of an expert and reading his responses, if you are unlucky enough to find yourself perusing their forums, are very helpful as he's good at explaining away those frightening 'exceptional' cases.

A few facts. Mean age of onset is 57. Atypical onset accounts for 6% of cases (this is the onset you're afraid of). What is 6% of .000017% of the general population? That's the figure you're looking at. This is disregarding age and family history. Your chances are actually quite a bit smaller assuming you're around 20 or so; which I presume you are. Truly, you have a better likelihood of being struck by lightning and not just once. 
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #9 on: May 31, 2014, 05:08:18 AM »
You'll read a study, too. The infamous 6% study. I've already looked into this deeply and what I have said is based on that study as well as the Mayo study. People who have read the study tend to have a poor understanding of the material and you will find fear-mongering. Those 6% DID have UMN symptoms (asymmetric reflexes or something along those lines). They did not present solely with twitching.

Right, well. Not sure who I was trying to help. You or myself. Hopefully this is adequately thorough.
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Offline Niceguy237

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #10 on: May 31, 2014, 08:43:55 AM »
I can relate to a lot of this discussion.  Struggling with many of same fears.  Saw neuro 2 months back, he did full exam, saw no red flags, basically told me no worries and to see him in 6 months.  Went back a month later due to excessive fatigue - he did same exam, saw nothing, but scheduled emg for September.  Tough wait for me, I have lots of twitches (especially after working out) and shoulder stiffness that seems abnormal.  I also seem more fatigued after a workout.  Nervous but trying to push through best I can. 
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Offline NytViolet

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #11 on: May 31, 2014, 12:46:15 PM »
I began twitching 17 years ago, and went through the *** fear.  I walked around the house on my tiptoes, and did other ridiculous exercises almost non-stop to reassure myself.  I spent a YEAR of self-imposed hell waiting for the day I'd wake up and find some horrible symptom.  I believe I told Mexican that I saw two neurologists for a total of 3-4 visits... they found absolutely nothing except SLIGHT hyperreflexia (which is normal if you are fairly muscular, which I was at the time from running and playing tennis).  This is how sick the mind can be:  Now, after 16 years not even thinking about ALS, I've started to develop the fear again just from reading the forums!  How sick is that???  I challenged myself to google *** and read about it again (just like I did so many years ago) and found myself in the midst of a full-on panic attack the other day.  I have fibromyalgia, so twitching is VERY common for me, as is PERCEIVED weakness, fatigue, and general clumsiness at times.  Suddenly, a casual misstep while wearing flip-flops is a major concern and I find myself overanalyzing everything just as I did so many years ago.  I was at my brother's house watching a movie and sitting cross-legged on the sofa; when I went to stand up, my legs felt heavy, odd and tingly (of course they did! I'd spent almost 2 hours sitting cross-legged).  Our rational minds tell us we're overreacting, but it's a touch fear to beat.  I guarantee if they found a cure for this tomorrow, 100% of the *** worriers would move on to another disease to obsess over.
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #12 on: May 31, 2014, 12:48:31 PM »
I began twitching 17 years ago, and went through the *** fear.  I walked around the house on my tiptoes, and did other ridiculous exercises almost non-stop to reassure myself.  I spent a YEAR of self-imposed hell waiting for the day I'd wake up and find some horrible symptom.  I believe I told Mexican that I saw two neurologists for a total of 3-4 visits... they found absolutely nothing except SLIGHT hyperreflexia (which is normal if you are fairly muscular, which I was at the time from running and playing tennis).  This is how sick the mind can be:  Now, after 16 years not even thinking about ALS, I've started to develop the fear again just from reading the forums!  How sick is that???  I challenged myself to google *** and read about it again (just like I did so many years ago) and found myself in the midst of a full-on panic attack the other day.  I have fibromyalgia, so twitching is VERY common for me, as is PERCEIVED weakness, fatigue, and general clumsiness at times.  Suddenly, a casual misstep while wearing flip-flops is a major concern and I find myself overanalyzing everything just as I did so many years ago.  I was at my brother's house watching a movie and sitting cross-legged on the sofa; when I went to stand up, my legs felt heavy, odd and tingly (of course they did! I'd spent almost 2 hours sitting cross-legged).  Our rational minds tell us we're overreacting, but it's a touch fear to beat.  I guarantee if they found a cure for this tomorrow, 100% of the *** worriers would move on to another disease to obsess over.

yeah you did message me, and it got the best of me, after a week of feeling fine it came back. week is good compared to like a day of happyness.
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Offline madmexican808

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #13 on: May 31, 2014, 12:52:00 PM »
You'll read a study, too. The infamous 6% study. I've already looked into this deeply and what I have said is based on that study as well as the Mayo study. People who have read the study tend to have a poor understanding of the material and you will find fear-mongering. Those 6% DID have UMN symptoms (asymmetric reflexes or something along those lines). They did not present solely with twitching.

Right, well. Not sure who I was trying to help. You or myself. Hopefully this is adequately thorough.

I am tried so hard to avoid neurologist because assuming its expensive? and I feel I would waste my time and the doctors. But what you said helps alot. What caused you to freak over a**?
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Offline thenomnomnomicon

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Re: seeing a neurologist and trying to get an ALS Test
« Reply #14 on: May 31, 2014, 03:38:33 PM »
Neuros are not too expensive. The EMG is unless you have insurance.

I began twitching body-wide really abruptly and experienced 'pseudocramping' (feels like really tiny pains/fleeting 'cramp-like' feeling or you're about to cramp, but never quite). My twitching has reduced drastically; not sure how to feel about that honestly. The week prior I'd been hyperventilating/feeling unable to catch my breath. I'm hoping it was brought on by that.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

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